Black Hole Sun

My latest preventative medication attempt was Lamictal. It is an anti-seizure medication used very successfully for bipolar disorder. It has also been used for migraine prevention, off-label of course. I have taken it before, but couldn’t remember any specific side effects or why I stopped taking it. The usual problem for me from this type of medication is extreme, can’t-get-out-of-bed type depression. Taking Topamax, I’d have been a suicide risk (this was pre-children) but for the fact that there would have been no way to summon the will or motivation to plan or even move. This time, I obliged to appease my new doctor, the cold and distant, hot and young, terrible at listening Dr. S “Manhands”.

And when I got home from my appointment that day, I did some research and found that Lamictal really did sound very different from Depakote, Neurontin, Topamax, and many others I’d tried with disastrous results. Lamictal is used sometimes to treat depression which is unresponsive to SSRIs; depression was listed as only a very uncommon side effect. So it seemed different. No weight gain, no lethargy, no sexual issues. In fact some people reported energy and sex drive boosts. The one bad possibility was a potentially deadly rash, so yeah, I was watching out for that.

John said he noticed an immediate difference, that I seemed distant, like under a veil. I shied away from affection. He’s always the first to pick up on those things. Because of the potential of Deadly Rash you start at a very low dose and slowly increase, every 2 weeks. The depression and anger, noticeable even to me, started the second week, while still on only 25 mg.

The blog entry entitled “anger”…? That was Lamictal. It should have been entitled “What Anti-Seizure Meds Do To Me.” Rip pictures of my family, art my children created, artsy black&whites of Marilyn Monroe off my walls? Not me. Feeling that sorry for myself because of my illness isn’t me. I’m very accepting of it, normally, because it’s all I’ve ever known, and I wouldn’t be the me I know and understand without the fucking migraine. So I live with it, day in and day out, only feeling sad when I miss an important event or let down my co-workers too often. And, obviously other times too. When I have lots of ER visits. Doctors not taking me seriously. A med I had high hopes for not working or making me worse. Lamictal: a double edged sword. Not only did I get worse headaches while taking it, it also took me to the deep rock bottom valley of depression, so much so that even after deciding to give up and taper off of it, I physically could not get out of bed yesterday and lay with the covers pulled up to my chin, falling in and out of nightmares, tears streaming down my cheeks. I received some much needed support from Facebook and my friend Leah at work, who said the glass palace was blissfully slow and to just take care of myself.

When J came home from teaching he coaxed me out of bed. He talked to me for a long time as I prepared to go to work 4 hours late about how it was the drug making me feel that way. The research HE did produced stories of people planning suicides and then realizing it might be the Lamictal. I wrote a post on Facebook thanking friends and family for supporting me through everything. I thought I might be able to go to the show John and my brother were playing at our favorite Local Dive Bar that night. I flushed the rest of my Lamictal down the toilet and weaved a small braid into my hair. Work, the sunny, friendly, beautiful glass palace, would make me feel more myself.

Except it didn’t. Immediately upon arrival I got two messages: a text that the friend I’d hoped to see at Dive Bar couldn’t go; and an email from a person close to me saying I hadn’t thanked them personally in that Facebook post and how hurt they felt. Those two things would upset me a lot on my best day, for various reasons. Why do I care who’s at the show, my partner is performing, go anyway! but it seemed impossible. And why would I, why DO I, reveal so much on Facebook when even though it is sort of my migraine support group, it often leads to problems? These thoughts resulted in self-blame, sadness, feeling unloved. I decided I couldn’t go to the bar and that I had to quit Facebook for a while. All I wanted was to be back under my covers. I was barely able to sit in my chair and do a minimum of work, counting down the few hours of my shortened day. Jess bought me a milkshake with whipped cream, which helped. I left early enough for john to make it to his show. And back to bed, “hang my head / drown my fear / till you all just disappear,” girls sleeping, me fervently hoping that the fucking Lamictal would be flushed out of my system as soon as possible. Get up? Try to live? Why?

Today, my family is allowing me another cocooning day, avoiding the things I had planned, which would involve the impossibility of People and Small Talk. Good things: my middle of the night headache I’ve had every night this week was not as bad last night. Earlier this week I looked into Zanaflex, the muscle relaxant Dr. H put me on right before leaving the practice, and there are studies showing it effective in chronic migraine prevention at much higher doses than what I was prescribed. I called the office, and Dr. Manhands trusted my instincts and increased the dose 6x (still half the target dose in the study). I can’t tolerate any standard preventative so this might be good as long as I can stay awake during the day. And the support I receive from my family and friends, particularly from my amazing and nearly other-worldly partner J, is still nothing short of miraculous to me. In that way, I am the luckiest girl alive.

But for now… more Xanax, more Zanaflex, more restorative sleep. Hoping for the rain in my heart to be washed away, so that the winged real me can emerge.

**photo credit: Rebecca Midden

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One thought on “Black Hole Sun

  1. Elizabeth,I have migraines, but not chronic daily ones like you have. It is so terribly unfair when the meds that we hope will help–that are supposed to help–make us feel worse. I'm sending my best flush-that-nasty-med-out-of-your-system-quickly energy, in hopes that you feel more like yourself very soon. Peace to you. Jeannie

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